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Medulloblastoma Diagnosis - Johnathon - 3 yr old

sweetsurprisesbyteri
0 Recommendations

Hi. I'm Teri, mom to Johnathon who was diagnosed with Medulloblastoma 3 days after his 3rd birthday. He had surgery the next day at Cooks Children's Hospital in Fort Worth, TX and started his first chemo session last week there also. We are following 9334 as we couldn't live with the late effects of full radiation.

He was fully resected and staged at M0 - he had no signs in his spine or spinal fluid. We were very lucky as Cooks has an iMRI machine and they were able to make sure they fully resected first surgery. He has very few if any side effects from his surgery - his post surgery balance issues are almost all gone and he is the same loving, sweet, smart little guy he was before.

He hates his medications (we do VP-16 daily) and really hates the mouthwash but we'll do whatever necessary to get him better.

Teri

Explore topics in this discussion:

Cancer Surgery Radiation therapy Stem cell transplant Stroke Seizures Bone marrow transplant Chemotherapy Pain Hearing aids Speech therapy Medulloblastoma Nausea and vomiting

21 replies

Angeleyes07

My daughter was also diagnosed with medulloblastoma Jan 08. I wish you all the best. No parent should ever have to endure the pain of watching their sick child. We do what we have to do to get through it & pray that it all works out. Take care.

Jay_449

I also have a 9 month old baby daughter that was diagnosed with medulloblastoma just before Thanksginving this Nov. 08. It was a shock, there were no signs what-so-ever but the head growth was a little high and her ped. sent her to have it scanned. The next thing we knew we were asked to take her to Children's Hospital ER in Dallas and she was in surgery the next day. 80% of the tumor was removed that day and nearly 100% on a second surgery a week later. She will begin a year of Chemo starting mid December. Please let me know if you have been through this and where things are at with your child.

Jay_449

How are things with your child?

sweetsurprisesbyteri

Johnathon is in his 2nd month a chemo at cooks. Please feel free to call me - 817-689-1825

Teri

Jay_449

Thank you Teri for providing the contact information. My wife Laura very much wishes to say hi. She will contact you soon.

She created a CaringBridge site to keep everyone up to date on our daughter Gianna. CaringBridge is a nonprofit organization that helps friends and families stay connected.

You can visit Gianna's CaringBridge site at http://www.caringbridge.org/visit/sweetgianna.

If your e-mail program does not allow you to click on the above link, just copy and paste the address into your web browser's address (or URL) location.

Please visit our CaringBridge site anytime. You can use the site to check in on Gianna, read the journal entries and send us messages by signing our guestbook.

You can also create a site for Johnathon When you register with CaringBridge, If you register on Gianna's you will automatically receive e-mail notifications each time our journal is updated. Or, you can subscribe to receive these notifications even before you sign the guestbook. (Of course, you can unsubscribe from these e-mail updates at any time.)

Jay

eeenic

My grandson, Aiden was dignosed, and had surgery to remove a brain tumor in July. (Medullablastoma) He is currently undergoing Chemotherapy in Children's Hospital of Phildelphia. I hope to join other families with similar challenges so I can learn from them as well as share my thoughts...
Aiden is doing well, we will go for his 3rd round of Chemo on Thursday, 01/08/09.
Take Good Care of you..luv Elaine

Angeleyes07

My daughter was diagnosed at 7 months. There were plenty of signs that something was wrong. My daughter was extremely cranky all of the time. She had two episodes of vomiting two weeks apart. I took several trips to the pediatrician & the er. They just kept telling me she was colic. I changed formula one after the other, nothing helped. The er finally gave my daughter a catscan because she was lathargic & had a head tilt. That day she was transfered to Schneiders Childrens Hospital in NY. 100% of the tumor was removed & there where no signs of cancer in her spine either. My daughter received 6 months of chemotherapy & a bone marrow transplant. It was a long hard road for everybody. My daughter is a fighter & loves life. She is always happy even with all she has been through. I have learned so much about life from this little girl. Julia is doing great!! She started walking at about 17 months & she is talking like crazy. She loves playing with her older brothers & is a big time Daddy's girl. We can only pray that things only continue to improve for her & she never has to go through anymore pain & suffering again. I wish you the best with your daughter. Think positive & be strong!!!! Our prayers are with you.

RebeccasDad

We used chocolate to mask the flavor of the VP-16.

My daughter was diagnosed with medulloblastoma at 17 months and had surgery (resection) at Children's Medical Center in Dallas followed by 18 months of chemo and radiation. She's now 9 years old, cancer free and a solid A-B student. Best of luck.

Mommytothreeboys

Your journey sounds like the one I have been on over the last year or so. My little boy Ian was diagnosed with Medulloblastoma June 2008. He was only 2 years and 4 months old. His surgery was a success and resulted in a gross total resection of his tumor. Later tests showed that his cancer had not spread. We felt so blessed and so grateful for those miracles. Because of Ian's age, he did not receive the standard treatent for Medulloblastoma, but underwent a Triple Autologous Peripheral Blood Stem Cell Transplant at Primary Children's Hospital in Salt Lake City Utah. It will be a year this June that Ian was diagnosed and today he is in remission. Despite the harsh treatments to hopefully cure him, the only side effect he has suffered is permanent bilateral hearing loss that is taken care of with the use of hearing aids. I consider it a small price to pay for his life. I have read so many experiences of others whose children have suffered incredibly and who have not won the fight and it is wonderful to read of someone else whose child has the same type of cancer, and is doing well! I pray that things continue to go well for your little boy and for your family! Take Care and God Bless!

Mommytothreeboys

Thanks for your response to Teri. I love to read of children who have beaten Medulloblastoma. The waiting is almost harder to me than the treatment. I have hope that all we have done to treat my son will do the job and yet it will be years before his oncologist will even say the words CURED. I'm am so happy to hear that your little girl is healthy, happy and succeeding in school! What a miracle and a blessing!

momofthreewinners

Teri,
How wonderful it is to hear success stories like that. My son Thomas was also diagnosed at a young age - 3 months shy of his third Birthday. His story began back in June when we noticed that he was was walking quite strange, and over a course of several weeks it continued to get worse. At first we wrote it off as possible growing pains or a strained muscle; but with it's worsening affects we became quite alarmed - and proceeded to take him to his pediatrician. While there she put in an order for an MRI. On Friday, 06/12 he had his MRI - which confirmed that he had a tumor the size of a golf ball in between the brain stem and cerebellum. The neuro team at Vanderbilt Children's Hospital quickly acted, and on Monday, 06/15 he had the tumor successfully recected, and furtunately with the aid of a spinal tap and MRI they saw that there was no spreading in his spinal fluid and cavity. That week Thomas was diagnosed with Medulloblastoma brain cancer. Now he is undergoing chemotherapy treatments at Vanderbilt Children's Hospital, where he'll remain in the hospital for up to 27 days at a time.

He is on month three of what is supposed to be a 6 month treatment schedule. Thus far he seems to tolerating the treatments quite well. He has some nausea and vomiting, but with the help of zofran and other drugs he seems to have less and less. Also his desire to eat dwindled, but with the help of an appetite stimulater (megestrol acetate) it has picked up quite a bit, and I'm fairly confident that he will not have to get his feeding tube put back in.

AvasDad

My two-year-old daughter, Ava, was diagnosed with medullosblastoma last month and we're about to begin our first chemo treatments...six months of chemo with stem cell replace, followed by six weeks of radiation and then oral meds for a year. Her tumor was completely removed with no evidence of spread. We do have to get a lumbar puncture this week to make sure none got in the spinal fluid, but our oncologist said when the MRI shows no spread, it's a good bet that the spinal fluid is clean.

Reading the stories on this thread give me hope that we can beat this. Thanks for sharing your stories. Here is ours: https://www.carepages.com/carepages/AvasFight

MeMewag

Hi, you are not alone in this journey. I thank God everyday for Cook Hospital , Dr. Richard Roberts, and Dr. Murrey. Grant Wagoner 's story is under carepages.com Name is SoilderGrantsupdates. He had surgery April 17 2008 for the same type of tumor and because of the MRI he was able to remove it all. The Hospital was great and like you my son and daughter in law did not want the whole body radiation and 52 weeks of chemo. Meredith got on the computer and found a program at MD Anderson and Texas Children that did Proton. He had 31 days of Proton and 4 treatments of chemo. His last treatment was Dec 18 2008 and now we pray very hard every 3 months when he goes to Cooks for his MRI and Spinal. This is very life changing and you are not alone. I am Grants MeMe and I was able to go live with Grant, his mom, and his brother in Houston and try to make life as normal as possible.
I have only read a little of your post but I pray you can meet up with my kids some day at Cooks. Everyone is so friendly there and everyone knows everyone.
I pray for God to Lift you up each day and help you through all the days ahead. You are so blessed to be where you are.
MeMe Wagoner

emilysvoice

my daughter emily was diagnosed with medulloblastoma in June 2009. She was 2 weeks shy of her 5th birthday. They were able to 100% resect and follow up MRIs have shown no tumor in her spine or brain. Spinal was also good. She has undergone 30 treatments of radiation,carboplatin and vincristine. She had a 4 week break and has had 1 of 6 maint. chemo rounds of cisplatin and cytoxin. We have found that maint. chemo is far rougher than the other she completed. She has a G-tube, she also came out of her resection without the ability to talk for 2 months and unable to walk with severe impairment to all motor skills, which was very difficult since she went to surgery completely normal aside from morning vomitting and headaches. She is now talking more clearly, has great strength in her upper body,motor skills are getting better with therapy. Her medulloblastoma is also a rare subtype called anaplastic medulloblastoma.

deekayjay

to Teri and all other parents who have a child with Medulloblastoma- I too understand the difficulty of fighting the disease. Good luck in your endeavor, and may the drs have the best treatment for your child. Specifically to Emilysvoice- I feel your pain so thoroughly. My son Kyle was diagnosed nearly 5 years ago with desmoplastic medulloblastoma at 7 1/2 yo. He had a 99.9% resection, the .1% was attached to his brain stem and the surgeon didn't want to do further damage to his brain. Thank goodness!! He too woke up just fine then 3 days later didn't talk, walk, or eat. He ended up in a wheelchair because he basically turned into a 45 lb. infant again. He didn't talk for 4 full months, had a feeding tube in place for over a year, had to relearn to roll over, crawl, walk, and eat. He has been thru Hell and back. We did the full 2 months of radiation ( he now has learning disabilities from it), 13 months of chemo ( which took away the upper 2 levels of his hearing thanks to cisplatin or cytoxin, I forget which one, so he now wears hearing aides). He is on growth hormone shots daily because the radiation damaged his pituitary gland, and this past summer developed something called SMART syndrome. Stroke-like Migraines After Radiation Therapy. It manifested with grand mal seizures. He is now on meds, but is being slowly weaned off them. He is in 6th grade now, in pure Spec Ed, but only functioning at around 2nd grade level. He is 12 1/2 yo, but his brain is around 8 yo. Watch your daughter for impairments, DEMAND that her school test her or see a neuropsychologist for testing, get her an IEP so that if she has brain damage you can deal with it early on. I understand your fight so well, you just can't imagine, we have been fighting for almost 5 years now, it'll be 5 years next week. He is in remission, he's had no relapses, and just has to go another 5 years til he's considered cured. Now we just fight against the late term effects of his treatment. Please feel free to private message me if you want more support. And to all parents- please realize the blessings shown to you each day, and be grateful for where your child is at, there is always someone else who's fight is harder than yours, and many who don't win at all. My son has had a tremendous battle to fight, but I'm grateful EVERY DAY that he's still here with us, even if some days are harder to deal with than others. May God bless us all!!

Godlover24

Hello, my name is Josh Thresher, I am a 16 year old boy, and I was diagnosed with medulloblastoma on October 4, 2009. I am right now on my fourth week of radiation and I must say it does not tickle. I pray each day for those who know or have any disease, and God bless you all.

Lisajoel

Hi, I feel for all the parents and families and especially the beautiful children who have had medulloblastoma. My 8 year old boy Lucais was diagnosed with a medulloblastoma on 26th August 2009, he had surgery which resulted in total resection and had no cells in his spinal fluid. He has completed 31 radiation treatments and will soon start 16 weeks of chemotherapy. Lucais is doing extremely well, he is full of life and is an incredibly positive and mature boy. It is a journey for us all which we can only face one day at a time. My heart goes out to you all.

missy09

To: Lisajoel and all others with children with Medulloblastoma
My son is 7 1/2 years old and was diagnoised with anaplastic (large cell) Medulloblastoma on 10/19/09 and had surgery with 100% resection and also had no cells in his spinal fluid. He is almost half way through with his radiation treatments and is doing extremely well except for his appitite. He will be going for 6 mos chemo following his radiation treatment. I am hoping that he will be eating better so that he will not be needing a g-tube. May God bless us all!!

TheLukester

Boy can I relate. My son thank God is a Medulloblastoma survivor. He was diagnosed when he was 1 year old. He had 80 % removed and then started high dose chemo and then a stem cell transplant. After the surgery he did not talk or respond for months. He is now 4 1/2 is able to walk but still can not talk except for Mommy & Daddy. He has profound hearing loss and I take him to a special school about a hour from my house every day in the hopes that he will progress. He has progressed but very slowly. He still does not eat ever since the long hospital stay and is tube fed 4 x a day and overnight. We were at CHOP for 8 months straight from when he was diagnosed. Now we are starting to have behavior issues. I have no idea what to expect from my son, Luke. But I sure what to do everything I can to give him a chance at somewhat of a normal life. Thank God he feels good now and we just have to deal with the after effects. I am thinking of having him evaluaed by a neurophsycologist to see if we can do more for him. I just do not want to think back at this time and wish I did more for him. He also has lots of sensory issue on top of everything else.
Bottom line he is a miracle. I want all of the other families going through this to know that my son was given a 10-30% chance of survival at the best hospital in the US and he beat the odds and has been cancer free since 12/2006. God bless you all

deekayjay

to TheLukester- get your son tested by a neuropsychologist, find out what age he is functioning at, and what can be done about the behavior issues. My son was a terrible three year old instead of terrible twos because he had a speech delay that we didn't realize was so bad til he was 4 1/2 and our younger daughter talked more than him. Once we got him into a spec ed preschool and had speech therapy for him the behaviors started to resolve themselves. He was just SO frustrated to not get his point across that he acted out, can your son learn sign language? Is he unable to talk or is his brain just not able to process speech right now? Find out his capabilities and run with it. My son is brain damaged and everyone would love for me to just accept his brain and move on with my life, but I'm not willing to set the bar so low that he doesn't even have to try to learn. I challenge him everyday because I want him to be the best he can possibly be. Do everything you can for you son, keep asking for advice from other parents, and you'll never have to wonder if you did enough for him. Sitting and doing nothing gets you just that, nothing. You are the best advocate for your child, raise your voice loud and long! Congratulations on beating the odds! Your son has a mission on this earth, you just have to figure out what that is now. God Bless!

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